I went blind and feel partly to blame

Leonie Watson lost her sight in her 20s after ignoring doctors' advice
about her diabetes for years. Here she charts her journey into
blindness, and the frustration of feeling partly to blame.

I became blind over the course of 12 months from late 1999 to the end of
2000. It was mostly my fault. I was diagnosed with type 1 diabetes when
I was a little girl - the type where your body stops producing insulin.
At the time they explained I would have to eat a precise amount of food
each day, and that I would need to inject a precise amount of insulin to
handle it.
When I was a little older I asked my paediatrician why it had to be this
way, why I couldn't work out how much food I was about to eat, measure
my blood glucose, and then calculate the insulin dose myself. To this
day I don't know whether he actually did pat me on the head, or whether
my subconscious has added a memory based on his reply ("don't be so
ridiculous"), but it doesn't really matter in the scheme of things. That
was the moment the rebellion started.
At some point during my teens I discovered I could skip an injection
without anything terrible happening. I stopped monitoring my blood
glucose levels almost entirely and when I was old enough to make my own
decisions, I stopped going to the doctor for annual check-ups.
Throughout my student days I had a riot. I smoked, danced, partied, and
kept on ignoring the fact I was diabetic.

By the time the century was drawing to a close, I was working in the
tech industry as a web developer. This was the era of the dotcom boom
and everyone was having fun. There were pool tables in the office, Nerf
guns on every desk and many insane parties. Paul Oakenfold was the
soundtrack to our lives, and we'd fall out of clubs at 6am and drive to
Glastonbury Tor to watch the sunrise just for the hell of it.

One morning in October 1999 I woke up with a hangover. As I looked in
the mirror I realised I could see a ribbon of blood in my line of sight.
As I looked left then right, the ribbon moved sluggishly as though
floating in dense liquid. Assuming it was a temporary result of the
previous night's antics, I left it a couple of days before visiting an
optician to get it checked. When I did the optician took one look at the
backs of my eyes and referred me to the nearest eye hospital for further
investigation.

When diabetes is uncontrolled for a time it causes a lot of unseen
damage. When you eat something your blood sugar levels rise and your
body produces insulin to convert that glucose into usable energy. If
there isn't enough available insulin then the cells in your body are
starved of energy, they begin to die and the excess glucose remains
trapped in your bloodstream.

As if that wasn't enough, the glucose will then smother your red blood
cells and prevent them from transporting oxygen efficiently around your
body.

One of the ways this damage eventually manifests itself is diabetic
retinopathy. In an attempt to get enough oxygen to the retina at the
back of your eye, your body creates new blood vessels to try and
compensate. The new blood vessels are created as an emergency measure
and so they're weak. This means they're prone to bursting and
haemorrhaging blood into the eye - creating visible ribbons of blood
like the one I could see.

This all has the inevitable effect of damaging your sight.

The people at the eye hospital told me laser treatment might halt the
breakdown of the blood vessels at the back of my eye and enable the
remaining vessels to strengthen enough to get the oxygen to where it
should go.

It wasn't pleasant. It requires an anaesthetic injection into the eye
before a laser is repeatedly fired at the back. I remember one round of
treatment skewing the sight in one eye by about 90 degrees - trust me
when I tell you it's impossible to remain upright in that state.

Looking back, I realise that laser treatment was a futile gesture.
No-one ever came straight out and told me the consequences of having
advanced diabetic retinopathy, it was always spoken of in terms of a
progressive deterioration.

I remember the day I admitted it to myself though. My sight had been
steadily worsening and it was a day in the spring of 2000 that it
happened. I was walking down the stairs at home when it hit me like the
proverbial sledgehammer - I would be blind. With absolute certainty I
knew I would lose my sight and that I only had myself to blame. I sat on
the stairs and fell apart. I cried like a child. I cried for my lost
sight, my broken dreams, my stupidity, for the books I would never read,
for the faces I would forget, and for all the things I would never
accomplish.

I reluctantly realised I needed help. My doctor prescribed
anti-depressants that effectively put me to sleep 23 hours out of every
24. After six weeks I decided enough was enough and took myself off the
meds for good.

A curious thing had happened in the intervening weeks though. While I
was asleep my mind appeared to have wrapped itself around the enormity
of what was happening. It wasn't in the form of a revelation or anything
like that, but it was a recognition of what I was up against, and that
was enough for the time being.

Over the ensuing months I gave up work as my sight continued to
deteriorate.

I had days when I raged out of control and screamed or threw things at
the people I loved just because they were there. There was the day I
stumbled in the kitchen and up-ended a draining rack full of crockery
that smashed into a thousand pieces around me. I remember once
demolishing a keyboard I could no longer use, and kicking the hell out
of the Hoover because the cable was so caught up around the furniture I
couldn't untangle it. And there were those days, too numerous to count,
when I bruised, cut, scratched or burned myself while doing everyday
tasks, and the rage and the tears would overwhelm me all over again.

Towards the end of that year, not long before Christmas, the last of my
sight vanished. When I think of it now, it seems that I went to bed one
night aware of a slight red smudge at the farthest reaches of my vision
(the standby light on the bedroom television), then woke the next
morning to nothing at all.

Preventing diabetic retinopathy

Image
copyrightScin

To reduce your risk of developing retinopathy, it's important to control
your blood sugar level, blood pressure and cholesterol level. Good
control will prevent diabetic complications in almost everyone,
according to the NHS. Other advice includes:

Only 3% of blind people are completely blind. Most have some degree of
light perception or a little usable vision, but I'm one of the few who
can see nothing at all, and nothing is the best way to describe it.
People assume it must be like closing your eyes or being in a dark room,
but it's not like that at all. It's a complete absence of light, it
isn't black or any other colour I can describe.

Instead my mind gives me things to look at. It shows me a shadowy
representation of what it thinks I should see - like my hands holding a
cup of tea. Since my mind is constrained only by my imagination, it
rather charmingly overlays everything with millions of tiny sparkles of
light, that vary in brightness and intensity depending on my emotional
state.

My retinas are long since gone, so no actual light makes its way to the
back of my eyes. This is what gives my eyes their peculiar look - each
pupil is permanently open to its fullest extent because they are trying
to take in light. And oddly, it's the appearance of my eyes which still
makes me feel a little uncertain about being blind, but given that I no
longer really remember what I look like, perhaps there will come a time
when that will fade and leave no uncertainties. I'm pretty well-adjusted
to being blind.

Image
captionLeonie,
pictured with her fiance Dan

With the last of my sight gone, things actually started to get a lot
easier to deal with. I stopped trying to look at what I was doing, and
started to use my other senses.

Let me clear up a common misconception while I'm here, I do not have
extraordinary hearing or sense of smell. I do pay more attention to
those other senses though. For instance, I'll often hear a phone ringing
when other people don't because I'm devoting more of my concentration to
listening than they are.

The next few months were a time of discovery, sometimes painful, often
frustrating, but also littered with good memories. I learned how to do
chores, how to cook, where to find audiobooks, how to cross the road,
and what it feels like to drink too much when you can't see straight to
begin with.

It's been 15 years since all this happened. Somewhere along the way I
went back to work, and I now have the uncommonly good fortune to be
working and collaborating with lots of smart and interesting people,
many of whom I'm delighted to call friends.

So life moved on, as life has a habit of doing. I celebrated my 40th
birthday last year - perhaps that is what has given me cause to reflect
and share my story.